[The world is turned upside down: How parents of children with spina bifida experience transition. A qualitative study].

The world is turned upside down: How parents of children with spina bifida experience transition. A qualitative study The coming of age of a child with spina bifida (SB) requires the transition from child-centred to adult-centred health care. This transition process (TP) calls for adjustments to the parental role, while health professionals assume a central position in accompanying the families.

Corticosteroid fear in parents of children with atopic dermatitis.

Topical corticosteroids (TCS) are the mainstay of therapy for paediatric atopic dermatitis (AD). The use of TCS is often met with fear by parents. Assessing this parental TCS fear in clinical practice is still lacking.

The characteristics and efficacy of educational nurse-led interventions in the management of children with atopic dermatitis - An integrative review.

Objective: This integrative review investigates the modalities, characteristics, and efficacy of educational nurse-led interventions for parents of children with atopic dermatitis (AD).

Methods: We conducted an integrative review with the following inclusion criteria: Quantitative, qualitative and mixed-method studies written in English or German and published between 1 January 2000 and 31 December 2021. We searched for entirely nurse-led interventions.

Parental experience of the neuromotor development of children with congenital heart disease: an exploratory qualitative study.

Background: Children with severe congenital heart disease (CHD) are a group of children at risk for neurodevelopmental impairments. Motor development is the first domain to show a delay during the first year of life and may significantly contribute to parental concerns, stress, and difficulties in early child-parent attachment. Thus, the aim of the study was to better understand the wishes and concerns of parents of children with CHD and explore their experience of their children's neuromotor development in the first year of life.

Effectiveness of a nurse-led preadmission intervention for parents of children with profound multiple disabilities undergoing hip-joint surgery: A quasi-experimental pilot study.

Purpose: The aim of this study was to assess the effectiveness of a family-centered care (FCC) intervention provided by an advanced practice nurse (APN) for parents of children with profound disabilities undergoing surgery.

Design And Methods: In a quasi-experimental design, we used the MPOC-20 to assess satisfaction with FCC and interviews to identify potential mechanisms for improving satisfaction.

Results: There was a positive effect on the MPOC-20 domain "general information," albeit with a small effect size (Cohen's d = 0.

When children with profound multiple disabilities are hospitalized: A cross-sectional survey of parental burden of care, quality of life of parents and their hospitalized children, and satisfaction with family-centered care.

Purpose: We aimed to assess parental burden of care, satisfaction with family-centered care, and quality of life (HRQoL) of parents and their hospitalized children with profound intellectual and multiple disabilities (PIMD), and determine the relationship among these factors.

Design: A cross-sectional study using printed questionnaires and qualitative questions was undertaken at a Swiss University Children's Hospital.

Results: The 117 parents (98 mothers, 19 fathers) studied indicated a substantial impact on burden of care and parental health-related quality of life.

Constipation prophylaxis in children undergoing orthopedic surgery: A quasi-experimental study.

Purpose: This study evaluated the effectiveness of constipation prophylaxis administered with the support of an advanced practice nurse.

Design: A quasi-experimental study with a historical control group of 112 pediatric (age 1-18) orthopedic patients and an intervention group of 59 patients was conducted in a surgical ward in Switzerland.

Results: The implementation of a standardized constipation prophylaxis led to an absolute risk reduction (27%) of constipation.

[Experiences and support needs of parents of hospitalized children with multiple disabilities: a qualitative study].

Background: The hospitalisation of a multiple disabled child is stressful for parents because they continue to carry out demanding care procedures in hospital. Yet, systematic knowledge of the parental experience and of their support needs is missing.

Question: How do parents experience the hospitalisation, and which support needs do they identify for this period? Methods: Twenty-six parents (24 mothers, 2 fathers) of 24 children with multiple disabilities have participated in this qualitative study.

[Experiences and needs of parents of hospitalised children with disabilities and the health professionals responsible for the child’s health-care – A systematic review].

Background: Children with disabilities are more often hospitalized than healthy children and burden their parents additionally. Though the parents usually take care of the disabled child in the hospital, systematic knowledge on the experiences of these care-giving parents in hospital is missing in German-speaking countries.

Aim: What are the experiences and needs described by parents of hospitalized children with disabilities as well as by health professionals responsible for the child’s health-care and what are the implications for parental support?

Method: A systematic review according to the PRISMA Statement was performed in the databases Pubmed/Medline, PsycINFO, CINAHL and EMBASE in January 2014.

[Living with bladder exstrophy - the patients' perspective].

Bladder exstrophy (BE) is a rare but severe urogenital malformation that requires complex clinical management. It can lead to physical restriction as well as to psychosocial and psychosexual malfunction. For the first time, this qualitative study describes the experiences of persons living with BE from childhood into adulthood.